TB-care and treatment are the worst-hit sectors during the COVID-19 pandemic. Governments have failed to attend to the serious concerns raised by TB advocates
While initiating the discussion Sreenath Namboodiri, Assistant Professor of Law, the Chinmaya Vishwavidyapeeth, observed that TB is an unsettling public health crisis in India. In 2019, WHO estimated an incidence of 26.9 lakh cases and in 2018 India held 27 per cent of the global total TB cases. Unfortunately, the gravity of the TB scenario is heightened by the drug resistance that the disease-causing bacterium (Mycobacterium tuberculosis) achieves. The severity due to drug resistance creates variation in the severity of the illness requiring stronger medications that carry even stronger side-effects.
The current treatment regimen is a combination of multiple drugs, and the current medications used to treat TB include: Isoniazid, Rifampicin (Rifampin), Ethambutol (Myambutol) and Pyrazinamide. However, these drugs have extreme side-effects resulting in hearing loss, psychosis, etc. Nandita Venkatesan expressed the agonising trauma faced by the TB patients’ day-in and day-out consuming stronger toxic drugs to battle Multi-Drug Resistant TB (MDR-TB)for a prolonged period. As a result, these patients face several side-effects including loss of hearing and eyesight, neurological diseases, kidney malfunction or even depression. While bringing her inference from the MSF campaign, Leena Menghaney emphasised on the need for more work in the field of R&D to reduce the side-effects caused by these injectables, which are painful and leave the patients with disabilities throughout their lives.
Unfortunately, Chetali Rao pointed to the fact that the global drug pipeline for TB was very bleak compared to drugs for other diseases.
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Providing a glimmer of hope Advocate Chetali pointed that three drugs (Bedaquiline, Delamanid and Pretomanid) are in the regulatory market approval stage, while many other promising drugs are undergoing clinical trials or under pre-clinical development. These newer medicines and their combinations have greater effect in curing TB with fewer side-effects. She also hinted upon the usage of BPaL, a combination of Bedaquiline, Pretomanid and Linezolid, which together contribute to bactericidal and curative activity against extremely drug resistant TB (XDR-TB) and MDR-TB. Providing a word of caution and criticising the lack of transparency, Leena pointed out that there is unavailability of data in the public domain, clarifying the efficacy of these combinations. However, these drugs are patented and highly-priced, thereby creating hurdles in accessing them. Leena pointed out that most of the drugs protected by patent are unmerited. It is important that the government gathers the political will to move away from injectables to oral-based treatment (as WHO prescribes) with newer drugs, both in adult and paediatric regimens (Delamanid is promising among the young). She was optimistic that the current COVID-19 circumstances would push the policy forward towards oral-based treatment at the comfort of home, as there is no public health sense to leave for TB treatment and return with COVID-19.
Leena pointed out the lack of legal aid to protect the right of the patients to access and afford these drugs.
The success of the HIV campaign was that there was a strong group of lawyers providing legal aid supporting the civil society struggle.
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A similar approach is necessary to this multifaceted battle against TB. She requested the academic scholars to coordinate and come up with policies addressing this appalling situation. “We lack the technical capabilities to effectively push for compulsory licencing, where the MNCs hold a dominating position. With the help of academicians, we can moot for transparency in clinical trials as well as in the patenting process”, she said. Nandita expressed the difficulties that the patient group suffers, even though they are the prime stakeholders in the issue, in getting their voice heard among the ranks of the government. TB advocates all over the nation had expressed their concerns and grievances caused due to COVID-19 to the government, which had received a much-delayed response after months. In consolatory, Nandita and other advocates were asked to be a part of a technical committee to look into the concerns of TB patients amidst pandemic, but often such seats are a formality. This gesture of formality was too late of an action, and does not meet the standards of response which the hour demands, Nandita said.
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